May 2017 Research 1st – Dr. Nahle Letter

May 23, 2017

Dear Friends,

May 2017 is an important month for ME/CFS for many reasons. May 12th commemorated ME/CFS awareness day, an occasion that was promoted this year by the CDC, the NIH, and the states of California and Massachusetts. It is also the month when 1) Numerous applications for the prospective NIH consortiums on ME/CFS were submitted; 2) A new research grant competition cycle was launched through our Ramsay Awards; 3) Thousands of messages were sent to congress to support 53 ME/CFS advocates who converged on capitol hill for a week of intense advocacy that featured an ME/CFS congressional briefing; 4) An expert panel that is entirely focused on ME/CFS will be convened next week at the prestigious Precision Medicine World Conference (PMWC); 5) and an annual meeting organized by Invest in ME Research is taking place in London at the end of the month. That is in addition to numerous features and news highlights on ME/CFS in the public domains, including an important scientific paper published in the journal Microbiome. In this issue, we have updates on some of these events with others soon to follow.

On January 27, the National Institutes of Health (NIH) posted two competitive funding opportunities: one for collaborative research centers (CRCs, U54) and another for a data management and coordinating center (DMCC, U24). I want to discuss briefly the Collaborative Research Centers (CRCs) and the Data Management and Coordinating Centers (DMCCs) for their importance. The Solve ME/CFS Initiative is participating in seven different NIH applications. The deadline for these proposals was May 2nd, and we assembled and coordinated hundreds of elements with diverse groups. The privilege of participating in so many different applications, organized by diverse teams for partnership and collaboration on both CRCs and DMCCs proposals, was humbling. From the beginning, we strived to make SMCI a trusted scientific partner and a credible resource for everyone who is creating value in our disease space. Without bias or prejudice, our policy is to assist in every way for cause and not for credit.

Judging by the information we have so far, it is clear that the response to the NIH ‘centers’ grants solicitation (with the U54/U24 designation) has been extraordinary in count and quality. These are complex proposals which require dedicated teams to see them to completion. The fact that there appear to be around ten proposals submitted through both funding opportunities is encouraging.

We expect that the field will be infused with new researchers as well. In the last three weeks alone, I have coordinated, supported and collaborated through strategy sessions with more than a dozen world-class experts in epidemiology, biostatistics, clinical care and management, applying their talent for the first time to the ME/CFS field. This, in and of itself, is an important development.

So, despite the current climate of proposed federal budget cuts and uncertainty, we are encouraged by what we have witnessed in the days leading up to this important milestone. As always, we are standing by to assist the scientific and advocacy community as they consolidate ideas and streamline research studies through the federal funding process. We look forward to the commencement of the NIH review process and we watch for the outcome with the desire that all meritorious applications be funded on the first round.

We wish all applicants the best of luck!

Yours,

Zaher Nahle
Chief Scientific Officer and Vice President for Research
Solve ME/CFS Initiative